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Alzheimers Association Apology.
I would like to see a public apology from the Alzheimers Association
for them deleting my threads. As a person with this disease I go thru great lengths
to write and place thing out to this community. I try to insure I am accurate
and sometimes spend hours to put together my response. Very frustrating when
they are deleted and I have no Idea it happened. This creates to much confusion
This site is getting very odd, overly religious, pollyana-ish and reactionary if one person complains. We ALL deserve to b heard and hiding from the truth does no one here any good
And I think you should be able to share your posts and thoughts and information. We are not in a bubble here, far from it and information is needed, truth is needed, not this oh lets all get along garbage
Michael, that is a new height of awful irony, for an organization which is supposed to support PWD to silence a poster with dementia. Evidently they wish to rewrite internet history to favor someone else than the very population they have said they wish to serve.
Gotta say, I value all your posts highly!
Michael, I may not always post, but I always value your posts, and I've learned so much from you. Hopefully, the powers-that-be will see this thread and lighten up a bit.
And from gubblebumm: This
site is getting very odd, overly religious, pollyana-ish and
reactionary if one person complains. We ALL deserve to b heard and
hiding from the truth does no one here any good
I absolutely agree. This disease is horrible and stressful as it is, and this place can be a lifeline. Deleting posts may have a short-term benefit to some, but (imo) in the long run, it's short-sighted as it erodes trust.
It is really important to know that IF for a significant reason, a Post or Thread is deleted by an Administrative Moderator, in ALL cases, they will notify the individual Member that this is being done and the reason why. There are no exceptions to this. If a person has not been contacted and notified, then no one at the Alzheimer's Association has removed the Post.
In all other instances, only a Member can delete his or her own Posts EXCEPT: If the Member is Posting on someone else's Thread, the person who initiated that Thread can delete said Thread.
So; if a Post disappears and one has not been notified of this by an Administrative Moderator, then that Post was not removed by anyone at the Alzheimer's Association.
I have been on the Message Board since 2006, and been a Peer Volunteer since 2009; in all contacts for any personal issue or other interaction, I have found those professionals on the team who administer this Message Board to be very caring and very supportive of myself and my care challenges, and also deeply caring and supportive of all of the Members as they work diligently to support and care for this Message Board . The word, "Moderator" is a blank word that come from technology. It is faceless and unknowing. It does not describe the individual professionals behind the scenes in Administration who are dedicated to striving to provide and oversee (Moderate) this wonderful service to so many; and that is no small thing. As said, I have had very good support regarding my own experience in the very difficult days I had with my Loved Ones with dementia or when I have had a problem issue that I felt needed to be addressed..
NOTE: If you have a problem concern or need assistance; if you wish to communicate that to the Administrative Moderator Team, at the top of this page you will find a prompt that says, "Contact Us." You can use that to reach a variety of assistance including communicating with someone on the Administrative Team that "Moderates" this Message Board and you will get feedback. I have found that to be helpful.
Please do not make excuse for them as they have deleted many of
mine in the past and never said anting until I reached out to them. All I want
is my data that I had worked so hared to get from key people who had helped me
with my replies. This place is so one-sided with their views. They always think
they no better and most time they don’t. I am tired of going to top management
as they dot do anything to make it better.
Alzheimers Association claims to care about those with dementia but
for 10 years working with them they ignored most request to help those living
with dementia. I have a few great friends at the top but sadly this organizations
is extremely slow to change for many of the wrong reasons. They care more about
themselves then doing good to change things for those living with dementia. I
have seen that time and time again. I can assure you I gave them many opportunities
and I was very slow to learn that because I have people there that I real like
as friends. Not sure they still consider me that. For years I fought for them and told others
they were wrong but there is only so much one can say before you realize that
they will not change but you tried so hard to make that happen.
I wants use to give them thousand a year in donations but I stooped
that 5 years ago because of all of this. I had even remove them from my will
which they would have had a big chunk of change. All of the organization work
together to be in this fight and meet at the table monthly except AA. So what
does that tell you about them.
That is why I have donated tons of my money to https://www.usagainstalzheimers.org/
I strongly recommend you do the same. Those people have taken many
of my ideas and they are all happening in many places. Don’t get me wrong they
still do some good things but it could be 60 percent better if they listened. So
many of you would have it so much better if they only implemented my
recommendation which they refused. That is why you all struggle for help when
you need it.
dayn2nite2 -The information I shared from that company was some of the best out
there to help people in need. Maybe it over your head to understand that as it
was not an advertisement. It was to help educate those that need it.
By the way I paid for that information and I was given the approval
to share it for free to those who need it here.
Whether I like or dislike his post is irrelevant, I agree. It is simply inappropriate on this section of the forum, and if you do a little digging, you can see that he has several bones to pick and is on a mission to paper the forums with them.
Thankfully there are no rules which limit posts to a particular forum...this is really good for it allows caregivers to learn from our members with dementia and vice-versa. In addition some very strong friendships have developed because of this and some our members who have dementia and no "caregiver" now have some " adopted caregivers".
As to relevancy? Wel,l who is to say what is relevant.
If you are going to be a detective and trying to help your loved
one then it helps to understand the minds of those living with dementia.
Sure it may be not a big deal to you but this is a huge deal to me.
Why are your issue more important than mine when I think they are a huge impact
on my life.
It takes me hours to write replies at time. I spend a lot of time
insuring accuracy of the information I provide. I have other experts sometimes
help like I did in the one that was deleted.
My goal of that conversation was to help educate others on pharma
and give caregivers a better understanding of why they should like Biogen or at
least not hate them.
The Alzheimers Association claims they support people with dementia
and tries to encourage them to be part of society. You would never know that by
how they act and treat people like us.
I want to be treated with respect as that is important to me till
the end and they do not do that. They have a few people that they play favors
to who live with dementia who are there puppets.
I am not one and will never be as I challenge everyone to do better for all of those impacted. Prime example they sat on NAPA committee for 6 or
more years and they never fought as hard as I did to make it better for those
with dementia. It was the one who opened up the doors to have person living with dementia
to be on the NAPA committee. I brought AA to my meeting as my invite. For years
no person wth dementai from our country could be heard out side of the NAPA meting room. I
just won a class action against NAPA and they will now give people with dementia
the rights to dial in from their home to finally have a voice.
You should ask why they did not do that. And not to mention it when
I had made a error in what I said at NAPA many years ago instead of standing by
me like all of the other organizations around the world they thru me under the
bus publicly but gave me false hope behind the scenes and I was even and Ambassador
of them and a ESG member. Other organizations came to my recue to help get me
out of the mess.
They did absolutely nothing. I have done more for this arena more
then you could ever imagen. I don’t look for awards and dont want them but I just wont the respect. I am
far from perfect and much worse now then ever but please show me the respect. I have enough issues in not trusting my self
and don’t need more from AA who claims they want to help me.
I think Michael is complaining here because the AA is not responding to him. I never heard of the NAPA group. But Michael can post on any board.
dayn2nite2 - We are all treated very different and that is why you
should be pissed off and want change. There were many times in the past that
they did reach out and offered the data.
Sometimes you were able to have them ignore deleting it once they
understood what was meant.
They should not judge with out speaking to the people involved.
If they trully care about peolpe with demantai then they will make an Apology.
Why is it so hard for some to say "I’m sorry"? It’s
remarkable how I knew that the Alzheimers Association would never do it as they
don’t care about those with dementia and only themselves. This just proves I
have always been right about them. Their motto is to just ignore it.
Thank you so much for those who support me. While I know this may
seem small compared to the issues you deal with it means so much to me.
I agree that this site should go back to locking threads than removing them, if they are going to do anything.
That would solve Michael's issue of not being able to find his posts and it would help the rest of us.
I believe they should clarify why they made that action when they do it. I think it would be wise to be clear on where the line is.
Removing threads is overkill and lazy. It means they just do not want to deal with our petty sh--. Fine, so set the expectation. Be clear where the line is so your posters understand.
You may even have less work in the long run if you are clear.
I think that would be a great idea to just lock them out. That is a
very good compromise.
To Alzheimers Association Moderators who monitor this site. Have
any of you folks made the Alzheimers Association aware of this request?